Thursday, June 26, 2008

After my blood work this morning, my doctor moved things forward with treatment since the counts have not improved, and in fact now my white blood cells are in very dangerous territory. We expected to start treatment today anyway so it wasn’t much of a surprise.

So today I started on the chemotherapy drug Azacytidine (goes under the brand name Vidaza). It’s administered subcutaneously into fatty parts of your body. For me they picked my belly fat, since it's the fattest part on me haha :) The treatment consists of 7 continuous days of injections (2 injections per day), and each 7-day treatment is called a cycle. After the first cycle the plan is to wait a few weeks, then start another cycle. They’re planning at least 3 cycles for now. It’s administered at the Swedish Cancer Care center, and if you haven’t been, it’s a pretty nice place all things considered. My nurse's name is Kevin, and he's super friendly. The private waiting room (where we spent about 3 hours today, ugh) had floor-to-ceiling windows overlooking downtown and their nice bamboo garden terrace. There is also a kitchenette nearby with free sandwiches and drinks. Since some chemo treatments are administered via IV drip and can take several hours to complete, they’ve fully decked the place out with DVD players, nice chairs and lots of stuff to do. It was pretty nice.

Anyway, in addition to the Azacytidine chemo drug, I’m also taking a small cocktail of other drugs to help combat the side-effects of the chemo, including anti-nausea drugs, anti-anxiety drugs, and steroids. (Also I’m not taking the AMG531 treatment like we had planned, for those keeping track, as it turns out the SCCA for some reason doesn’t have the right kind of authorization needed to administer it since it’s still in clinical trial.) According to the doctors none of the drugs, including the Azacytidine, should have any negative impact on the success rate of the upcoming transplant, so that’s good. The doctor also mentioned that the steroids might actually help increase my blood counts as well as the chemo. Typical of my software programming nature, I asked how we’d know which drug was responsible for increasing blood counts if we were doing more than one at a time and he super-quickly responded “it doesn’t matter. I don’t care which one works, we need your blood counts up now. It doesn’t matter.”

The good news is that it feels like a small relief to finally get started on some kind of treatment, even though the treatment is somewhat toxic, just to see if it helps pull me out of this funk. Also good news is that after all the drugs and chemo treatment I had today, I feel great, and am not feeling any side effects so far.

Finally, all the doctors are now more serious in repeatedly warning me against going out into crowds due to the risk of infection. One doctor even recommended against going out to all restaurants and grocery stores! While I’m definitely going to be cautious, I’m not sure it’s best for my mental well-being to avoid all kinds of activity around people. I will probably work from home for a bit, at least for tomorrow and the next week, until we finish the first treatment cycle. I’m kinda bummed about that and may come in for a few hours anyway (as long as Nat keeps all the crumbs off my desk haha), but the doctors I've talked to have said please work from home if you can.

That’s it for now. Thanks for listening! Oh, and attached are some pictures from the Swedish Cancer Care center where I’ll be going every day for the chemo treatment (you can see Johanna munching away on a free sandwich!)

Wednesday, June 25, 2008

Last Friday my doctor participated in a videoconference with members consisting of faculty and fellows from UW, physicians from the Hutch, and research folks from surrounding research facilities to discuss my case. From what I understand, these folks meet daily to discuss the cases of a few patients, typically 3 or 4. The discussion about my case mainly involved technical details around the transplant itself and how they wanted to proceed with it. My doctor is known to treat aggressively and was hoping to talk more about a treatment plan in the interim, so he didn't really get the answers he wanted. He'll be talking to the MDS specialist at SCCA today to get more info.

My blood counts are still low (I've been going in for blood work every few days) and continuing to drop slightly, so my doctor wants to start treament soon regardless of whether my sister (or parents) are a match for donor typing. We may start as early as Thursday on the drugs AMG531 and Azacytidine. The first drug (AMG531) is in clinical trial but has been in the works for about 7 years. Its purpose is to increase platelet production and apparently has very little side effects and good chance of success. The other drug, Azacytidine, is a chemotherapy drug, meaning it should kill off abnormal blood cells while helping to increase the production of normal blood cells across the board (white cells, red cells, and platelets). It also has few side effects, but can cause severe nausea and vomiting.

Since my white blood counts are also low, my doctor has repeatedly warned me to stay away from crowds (e.g. rock concerts, festivals) since I run the risk of getting an infection. Since the chemotherapy drug may cause my counts to go down before they go up, the risk of infection may be even higher after Thursday. He's recommended working from home if I can. Obviously I prefer working in the office for the social benefits and to help keep a semblance of normalcy, but I may need to work from home for a little bit next week.

The good news is that I'm in great spirits, mainly because Johanna has been so supportive and because I had my friends and family in town over the last week and we all had a great time doing lots of fun stuff. The weather is nice (it really does help lift one's spirits) and I finally seem to be over this cold I've had for the last 4 weeks which was causing my ear to be plugged up this whole time. Having a plugged ear is really annoying, and being able to fully hear again is such a nice thing :)

So the summary is: we may start treatment as soon as Thursday and I should be able to function normally while on the treatment, but I may want to work from home to avoid infections. I have another meeting with the MDS specialist at SCCA next Tuesday so I'm hoping to find out about whether my sister or parents are a match by then.

Sorry for the late update – I know I promised to send an update after today’s consultation with the doctors from the SCCA, but I was a little slow finally getting to the computer. Not because I feel like crap, but because a house full of friends and family is hard to get anything meaningful done :)

The consultation today went well (technically we’re meeting with doctors from the Seattle Cancer Care Alliance, not the Hutch directly, but the SCCA is made up of physicians from the Fred Hutch research center, UW, and Children’s Hospital). The MDS specialists are very experienced, and the ones we talked to are in many cases the authors of the same papers and research my other doctors have been referring to. We also did the blood work for my sister and parents to start the HLA typing process, but we won’t know whether my sister or parents are a match for a week or so.

Either way, we came up with two possible timelines:

My sister (or parents) are a match, in which case we proceed with the transplant right away. “Right away” actually means 1-2 months according to the transplant physicians. There will likely be some preparation leading up to the transplant including chemotherapy or irradiation, but I don’t know how many days/weeks are needed for this.

My sister (or parents) aren’t a match, in which case we look for a donor in the national marrow registry and proceed with the transplant after one is found. The process for this typically takes 4-6 months. Some treatments in the interim including chemotherapy drugs (e.g. Azacytidine) might be used to keep the MDS at bay. But it’s possible we could take an entirely “do-nothing” approach until the transplant happens, even if it takes 6 months, depending on how things go.

The good news is that the MDS specialists aren’t in any particular hurry to do the transplant. They all agree that the transplant should happen, but that the amount of time in months isn’t going to make a difference. This is actually a little bit of a relief to us, since the impression my oncologist has been giving is that if my counts (particularly the platelet counts) drop below a certain level, bad things will happen. So he’s been checking my counts every other day and obviously we’ve been hugely anxious and nervous each time about the results. However, the MDS specialists shed a lot more light on the issue and basically said it’s more complicated than that. In fact, the thresholds have changed many times over the past few decades, and most of the data for this are for 60-70+ year old patients, so it’s hard to project the research data for all this stuff on a 34-year old. They agree the counts are low, but unless I have a random stroke out of the blue or some other really serious injury, it’s not an immediate concern.

So whether we do the transplant in a month or 6 months doesn’t concern the doctors as much as ensuring the transplant has as much chance as possible to succeed. For example, doing treatments in the interim may improve my blood counts which has been hypothesized to aid in the success of a transplant. But again, it’s not that simple since there is no real proof of this and there are lots of differing opinions.

Finally, the doctor recommended potential donors simply sign up with the national marrow registry since we are not time-constrained on the transplant. I need to see if the National Marrow Donor Program (http://www.marrow.org/) is the right registry to sign up with. I’ll try and call them tomorrow. From what I understand, it’s not cost-effective to do a private typing for anyone but a sibling or parents since there is a strong chance I’ll perfectly match one of the 6 million people in the registry. So people should understand that if they sign up with the program, there is a tiny chance (approx 1 in 20,000) that they will match my HLA type, but they shouldn’t expect it, and that they’re really committing to a larger purpose of being a marrow donor and potentially making another patient in my situation very happy.

That’s all for today. My parents and sister got to sit in at today’s consultation, and we are all in relatively high spirits since there’s a lot of really good understanding going on at this point and because the situation doesn’t seem quite as dire as we previously thought. I have a couple more appointments in the next few days, but things should return slightly more to normal at least for a couple of weeks after that.

Monday, June 16, 2008

Yo, a couple of you have heard already, but I have some kinda freaky news to let you all know about. Last Friday they confirmed I have a weird blood disorder called Myelodysplastic Syndrome, or MDS. Basically my bone marrow is not functioning properly and it's causing all my blood counts (red blood cells, white blood cells, platelets) to be really low. They ruled out leukemia, but there are other problems that can cause this. It’s serious enough that I may need a bone marrow transplant in as little as 4 weeks. Yeah. Crazy. The disease is more common among older people so I have a pretty good chance of beating this thing with the transplant (apparently it’s the only known cure), but recovery could take 3 weeks in the hospital and maybe 4 months additional recovery if all goes well.

The weird thing is that I feel totally fine. It all kind of started out when I had some dental work in January, and my dentist was complaining that she was having a hard time getting the bleeding to stop around my gums, and suggested I see my doctor to see if I had anemia or something. I didn't think too much of it, but then a couple of months later I came down with a really nasty ear infection totally out of the blue. It was super painful, and the walk-in clinic where I got my ear drops said it was the worst ear infection she'd ever seen. I was zonked for like 2 days and was barely able to eat any food. So after that kind of cleared up, I decided to pick a primary care physician that I liked and scheduled an appointment. On the day of my physical, we got a blood draw and he said I was in great physical shape, and that I was a very healthy guy. Woohoo!

Then, I get a call from him the next day: "Hey Steve, we just got the results of your lab work and I need to see you, like, today." Uh oh. He said we could probably wait until tomorrow and I figured ok fine, I'll see you tomorrow morning. I figured it was some cholesterol issue or something. Then he called back again an hour later and said he really needed to talk to me that day, and that he doesn't usually prefer talking about this kind of stuff on the phone, but it was important enough. I was like "jesus, what's going on?". That's when he said he was referring me to an oncologist (cancer doctor) and that he had already scheduled me for an appointment that day. So I freaked out a little bit, called Johanna, went and ate some pizza at Pagliaccia and cried for a little bit and tried to take it all in, then we went over to the oncologist and spent the rest of the day there running tests. They did a bone marrow biopsy on me that evening, which is where they take a thin tube and grind it in to your hip bone, then run a syringe into that to extract marrow from your bone. They need the bone marrow to be able to run certain kinds of tests, since that's where your premature blood stem cells live. I sort of knew what to expect and was sedated, so it wasn't too bad, but that sure was a hell of a first day.

Anyway, I dunno how long I’ve had it or what the hell could have caused it or what would have happened if I hadn’t gone in, but it’s pretty freaky.

About Me

About this Blog

On June 5th, 2008 I was diagnosed with a blood disorder called Myelodysplastic Syndrome (MDS). What this means is that my bone marrow is unable to produce enough red blood cells, white blood cells or platelets. On January 27th, 2009 I had a bone marrow transplant, the only known option that offers a full chance of a cure.

I'm using this blog to help keep friends and family up to date, and also as a way for me to focus my thoughts and understand this disease so that I can power through it and beat it. Thanks to everyone for all the support. Your comments really cheer me up. I read them all!